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Bad days following bad pain days

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    Bad days following bad pain days

    This is where I find myself. I hit a low today and the burning comes upon me so fast that I can't take break through meds quick enough to catch up. I am exhausted emotionally from this and I don't have any answers. I have increased my Lyrica dose but I can't say that I am any better off. Maybe I need to go back to 400 a day. I am currently at 225 per day divided in 3 75mg doses.

    I am very exhausted from this 'groundhog day from purgatory or hell'. And I know things could be worse from reading others posts.

    #2
    Arndog, I am so sorry and wish I knew something to do or say to help. I just hope that you can get some relief somehow, at least a brief respite that will allow you to catch up with the breakthrough pain.
    MS with cervical and thoracic cord lesions

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      #3
      Arndog,

      I am sorry you find yourself in this blind alley and are presently just going through the motions to get to a better time.

      I am glad you felt like posting because you knew those of us here would care, and equally important, we can relate. Indeed we do. You are a pretty special person and I admire the way you think and write about what is going on in your life, and I learn from it.

      I still think about your compassion burnout post, almost every day. It is a standard work on pain. It helps me blunt my disappointment if someone is dismissive toward my central pain. They really do not want to hear about it, yet considering the overwhelming experience, it is the most natural thing in the world to remark that the pain is just massive, which somehow rudely interrupts their train of thought. We live in a parallel dimension of course, and not surprisingly, no one wants to join us in ours. Of course, if we had the option we would leave immediately. I guess this means others display ourselves.

      I waste a lot of energy trying to keep my mind occupied, yet at other times isolation in nature is the thing that keeps me sane. So no good formula for looking past the burning and creepiness of my flesh (As a scientist I wonder what the heck is going on in my nervous system--impossibly wrong). It is pretty easy to just turn around, become aware of your wretched body, and realize you are really lost, in life, and in your illness. I haven't found a specific method to get back on your feet, but somehow the mind seems to do it. Hang tough, as I know you will. Your posts help me.
      Last edited by dejerine; 6 Oct 2010, 6:06 PM.

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        #4
        Originally posted by arndog View Post
        This is where I find myself. I hit a low today and the burning comes upon me so fast that I can't take break through meds quick enough to catch up. I am exhausted emotionally from this and I don't have any answers. I have increased my Lyrica dose but I can't say that I am any better off. Maybe I need to go back to 400 a day. I am currently at 225 per day divided in 3 75mg doses.

        I am very exhausted from this 'groundhog day from purgatory or hell'. And I know things could be worse from reading others posts.
        Arndog,
        The researcher (rehabilitation medicine doc) who oversees the Botox bladder treatment study I'm participating in is going hopes to launch a study investigating the use of Alpha-Stim 100 for pain management in SCIs. The device was introduced in 1999 and is FDA approved. There's a Research tab on their website which you may wish to peruse.
        stephen@bike-on.com

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          #5
          Thank you for kind words, Dejerine, Bonnette, and stephen212. They are appreciated and I continue to 'move on' since that is the only option available. Dejerine, I agree that that compassion burnout thread turned into a good discussion and I related greatly to your comments.

          stephen212 - I took a look at that website and I tried to see if anyone has used it for central pain or chronic neuropathic pain and did not see this.

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            #6
            Originally posted by arndog View Post
            Thank you for kind words, Dejerine, Bonnette, and stephen212. They are appreciated and I continue to 'move on' since that is the only option available. Dejerine, I agree that that compassion burnout thread turned into a good discussion and I related greatly to your comments.

            stephen212 - I took a look at that website and I tried to see if anyone has used it for central pain or chronic neuropathic pain and did not see this.
            The study that is being proposed will investigate its application to chronic neuropathic pain in SCIs. PM if you would like the email address of my doc and you can inquire further directly with her. Obviously she's not in a position to say that you'll derive any benefit from it, but perhaps she can offer some background that may help you decide if the device is worth purchasing -- it's not inexpensive.
            stephen@bike-on.com

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              #7
              arndog,

              Sorry to hear you are having such a tough time right now...please continue to take care, ok?

              Teena

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                #8
                Arndog, I got up to 450 mg per day and about all it did was to help with the burning, and it was exspensive! now on Gabapentin 1800 a day and I have noticed a bit of relief but not with the pain. I've come to the conclusion that the pain is going to be with us no matter what!!! even the patch didn't take it away. I feel for ya man!!!!!!!!!!!

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                  #9
                  Thanks duge. Hey, how is your wife after getting hit by a car? Is she doing okay?

                  I have increased the Lyrica to 300 mg a day and took breakthrough meds and could be described as 'comfortably numb'. It's all about finding a way to get through the day.

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                    #10
                    Arndog, what a relief that you've found a dosage that allows you to get through the day, and I hope that this regimen will continue to work for you.
                    MS with cervical and thoracic cord lesions

                    Comment


                      #11
                      Originally posted by arndog View Post
                      Thanks duge. Hey, how is your wife after getting hit by a car? Is she doing okay?

                      I have increased the Lyrica to 300 mg a day and took breakthrough meds and could be described as 'comfortably numb'. It's all about finding a way to get through the day.
                      She's doing better!! still got some sore places and her wrist swells after she uses it. Still got some Dr app ahead but hopefully she will be ok THANKS for asking!!!!!!!!!

                      That's right man!!! I never had the numb thing going with it but Glad it's worked for you!!!!!!

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                        #12
                        Hang tough, arndog. I hope you find what it takes to balance it all out.

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